Glad to have yesterday behind. A bad day went to worse late in the evening. Recall, the first slap in the face was learning Ryan’s eyes are not improving. Without time to process this, another slap to the face. His forearm x-Ray looked even worse than the initial injury. The radius bone seems to be healing, but the ulna bone has separated even further. At least that’s how it looks to me. I”m not a doctor, I just play one in real life…
Forearm one month later
Please excuse the quality of the photo (above), as I took it on my iPhone from a computer screen.
Then, late into the evening I am shocked to discover Ryan’s surgically implanted baclofen pump is recalled. I subscribe to the FDA recall website, so this is how I learned of it. Funny, I guess I would expect the manufacturer to reach us. I’m interested if they eventually will.
What’s at risk from this recall? Straight from the FDA: “may result in patient harm, serious injury, and/or death due to drug overdose or underdose.” Lovely. The good news is, this only becomes an issue when the medicine reservoir is refilled. Ryan’s next refill is June.
So, today will be spent handling multiple concerns — eyes, arm, and pump — on top of everything else we normally manage. Have I thanked Vantrease and May lately for all the damage they caused? Really, they have no idea…
May they never rest, may they never have the feeling of true comfort and relaxation. For what they have done there is always going to be someone looking at them, down at them, for them…True cowards. You stay positive Diviney Family keep fighting we are all with you!
I know how exhausted I am as the primary caregiver for a vent-dependent quadriplegic, and yet my burden is so much less than yours, Ken.
Much of what you say about Ryan’s physical condition is oh-so-familiar, but my mother’s injury has very little of the emotional impact of Ryan’s. It’s sad that Mama can’t take a walk with her grandchildren, but at least she got to have grandchildren. She can’t dance at their weddings, but she can kiss the bride and congratulate the groom. She can still laugh (weakly), and talk (faintly), and interact with friends (if they’re patient), and enjoy life (tremendously). She’s still … herself.
And her injury wasn’t anyone’s fault. She grew a big, bad spinal tumor for who-knows-what reason, and we all had to come to terms with it. If someone had caused this — if it were the result of someone’s stupidity or evil — I would have wanted to smother them, at least in the beginning. It’s ugly, but I would have wanted to torture and toy with them, to drain the life from them slowly, watching the terror in their eyes as they realized what was happening and I laughed. I wouldn’t have done it, of course. But I would have found it hard to rid myself of the fantasy.
I hope someday you can quit occupying brain cells with thoughts of Vantrease and May. I hope that you’re touched by The Divine and find the peace of forgiveness. For your sake, and yes, for theirs. For karma, if you will, or for God. For that wee flickering flame of love in a maelstrom of evil.
In the human meantime, I think I understand. At least in part.
Ken and family, I read this website daily. Not only to see the updates on Ryan but also to give me a “reality check” on the world today. You and your family are truly inspirational to me as well as so many. The strength you, your wife, and your daughter, as well as Ryan is just amazing. I continually pray that this strength carries on. Although I do not know you, or did not know your son, I wish I could do so much more for you all. All I can do is continue to pray for the Diviney’s.
Have you ever looked into the St. Jude Foundation. I think the can help Ryan. I am sorry for all the negative stuff that pops up with Ryan. I know it is easy for me to say but think positively. And try to get those two *&% *&les out of you head. It doesn’t help to dwell on them. I continue to pray for Ryan and his family. I entrust him into the love of St. Jude.
Ken ,I bet you,re glad yesterday IS OVER….all the not good news you received would be too much for most people to bear,but thank God you have the strength and courage to do all you can possibly do for Ryan.It must not be EASY…I pray all the difficulties of yesterday will ease and work out someway.Thoughts and prayers for you all always. ~L Gail
What happens now, Ken, about the pump and Ryan’s arm? I can’t believe the X-Ray,
and I can’t imagine the shock of yesterday for you all; it is a shock to us, too! We will keep up our work of reading, writing and praying, and most of all contributing to Ryan’s Rally what we can. People here are so good and support you in every way they possibly can — doing God’s work as Christ taught us, and so are you and your family. Still here.
Dear Divineys,
Only by the grace of God could humans endure the pain and suffering you face 24/7. Your entire family, whether care giver or care receiver, battles struggles unknown to most of us. I can only pray incessantly and ask our Comforter to offer what I am unable to give. My heart is aching. Know that from the far corners of the earth prayers are being lifted up for your family. You are providing incredible care for Ryan and have a great medical team who loves and supports you. Never stop believing in yourselves and the power of prayer. You are loved, today and always.
Susanne, I have been missing you writing here. Just want you to know we need your ever-inspiring words like never before! Hope you are well.
Ken, I’ve written a “victim impact statement” for Ryan, you, Sue, Kari and all your family and friends many times in my mind, and still, I can never seem to capture the full extent of the damage that has been caused. Like you, I have to switch gears as quickly as I can, lest I sink too deeply into the mire of anger and sorrow. I don’t want anymore of the negative vibes from them, I can hardly say their names. Thank the Lord you are so on the ball that you even knew to sign up for FDA recalls. And you’re right, what about all the other souls out there who have this pump and may not be informed until something bad happens. What, now on top of everything else, you have to become a consumer advocate?? I know it’s not much solace, but we’re all upset about Ryan’s arm and eye(s). I am trusting Dr. Rodriquez will help guide you through this. Is there another specialist out there who can be consulted — someone from Children’s Hospital perhaps? Just throwing out suggestions, but I’m still here, and still praying. Let me know if, when it’s warmer, I can take Ryan outside for a stroll around the court. Love & prayers for a better day, and for healing.
Ever since I first saw the Washington Post article about your family last year, I’ve been praying for you… and I’ll continue to do so. May Ryan recover 100%.
GOD BLESS YOU ALL KEN!!!! Hang in there.. things WILL GET BETTER!!!!! I am so sorry for all you are goin thru and of course even more sorry for all RYAN is goin thru!!! He is such a good and strong person and so are you all!!!! GOD BLESS!!! <3 Thoughts and prayers for you always!!! <3